Alpha-1 Advocacy Alliance - Emotional Support

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The Alpha-1 Patients and Family

The Wait

Now that you have chosen the transplant team and center you want to work with, learned as much as possible about how the system of organ donation works through UNOS, you have made the decision to go forward for your transplant. Let's talk about things to help you cope with your waiting time prior to transplant. There are many things you can do to help yourself during the process: physical exercise programs, seeking out mental or emotional counseling, educating friends, family and healthcare professionals, getting and giving support to others by attending support groups at the transplant center or online with support groups via the internet, and re-establishing relationships with friends and family.

Let's start with getting as physically healthy as possible in preparation for the transplant. Because appropriate exercise helps you use oxygen more efficiently, it makes it easier to breath and makes you stronger. I know for me it was going to a pulmonary rehab for 14 months as many as 5 times a week prior to my transplant that made all the difference in how quickly I recovered after the transplant surgery. Exercise increases the flow of oxygenated blood to the muscles and stimulates the brain neurons to release endorphins that make you feel better emotionally as well as physically. Daily walking is a great exercise to increase stamina. A weight training program adds resistance that can help delay the onset of osteoporosis. Many transplant candidates have been on drugs such as Prednisone that has weakened our bones by depleting the calcium. You can exercise anywhere such as going to a gym, walking in the local mall or in your neighborhood, or on a treadmill at home or at a friend's house. Some of us like organized exercise programs such as pulmonary rehab, local gym membership, YMCA club, walking groups, or Jazzercise. Where you do your exercise doesn't matter, just do it.

Looking at the mental and emotional aspects and challenges of the wait can be demanding on you and your loved ones. It is recommended that being able to discuss and express feelings, fears, and even anger at the situation can be helpful to not only the transplant candidate but to their family. Insurance can help defray some of the cost of seeking counseling. Try to be open and available to these services during this time. The transplant center team can advise you who to seek services from if you do not have a therapist in mind. As always, you can email me at askpat 'at' alphaadvocacy.org. If you would like to discuss specific questions on a confidential basis. These services are offered at no charge.

When it comes to educating yourself and others about your disease and the different treatment protocols, the internet offers you unlimited information through such websites as the government NIH, WEB MD, UNOS as well as other university websites. Product information on the drugs from manufacturers and pharmacies are on RX lists. However, always check with your doctor before making any changes to your medication regimen.

There are several email support groups online such as Second Wind, who offers liver lists, lung lists, and chat rooms.

These email lists allow you to write or talk to others like yourself. You can find the information to join these on the A1AA website.

On the Alpha 1 Advocacy Alliance website there are many opportunities to get articles to help you educate doctors, friends and family.

Daily updated health information is available to read.

Support for Family and friends (Alpha 1 Assoc. Support groups, TRIO groups, other genetic disease groups-Genetic Alliance-Transplant support groups, parent groups and social groups), email groups, ASK PAT counseling services, and chat rooms.

Of course for those with a spiritual faith, church groups are always a beneficial support system.

Remember that every time you join a group, you extend your support system and gain new friends.

Finally, let's talk about re-establishing connection to family and friends. During this time it is usually easier for the transplant candidate because the focus is on them rather than the family. The family is in crisis mode and they are putting forth their best face and effort to support the transplant candidate rather than addressing their needs, fears and concerns. It's important for the family to have someone to go to and say, things like, He's/She's driving me crazy! I'm going to kill him/her if he/she does so and so one more time!” It would be helpful for you the transplant candidate to encourage your family and friends to do some of the following:

On a regular basis encourage them to take time to relax, eat healthy, exercise and have fun.

If need be, encourage them to get assistance from professionals or others to take care of you.

Encourage your family to join support groups or seek mental health counseling if they are distressed.

Encourage them to talk about their anger about their current situation if not with you, someone.

Encourage them to seek out information about the illness, so they are prepared for the changes to come.

On the practical side establish medical directives and living wills early in the diagnosis, so your family is aware of your wishes for medical care.

Sometimes it is easier to have a durable power of attorney rather than a family member make medical decisions in time of crisis.

And finally, discuss arrangements regarding wills, custody, funeral and memorial services. Though uncomfortable, it is easier now than in a crisis situation.

Discussing the above things may be difficult, depending on how your family is coping with your illness. I encourage people to talk about what they think is going on, and not expect the other person to read their mind, but to say what is on their mind. You should not be afraid to ask for what you need emotionally. Both caregivers and patients sometimes need to say, “I need a hug,” or “I need a back rub,” or “I need an evening off.” During this period family and friends can grow closer if they are willing to be honest and open about their feelings and needs.

Disclaimer: The information presented on askpat@alpha1advocacy.org is not intended to be a substitute for professional medical advice or to replace your relationship with a physician. For all medical concerns, you should always consult your doctor.

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